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Twenty-five years of diabetes. You bet that’s worth celebrating.
And I did, spending a couple of hours at a local Italian pasticceria with gorgeous family and friends, eating our way though pastries and drinking copious quantities of coffee. Is there a more perfect way for me to celebrate a quarter of a century – and over half my life – dealing with diabetes? I think not!
This commemorative coin was given to me by Jeff Hitchcock from Children with Diabetes. This is the organisation’s Journey Awards’.* What a fabulous recognition of the hard slog that is day-to-day life with diabetes. Of course, here in Australia there are Kellion medals, but these are not awarded until someone has lived with diabetes for 50 years. I love the idea of acknowledging years of diabetes along the way to that milestone, and am extraordinarily grateful to have this one on my dresser at home.
Because really, there is much to celebrate. Getting through the good, the bad, the ugly, the frustrating, the humorous, the wins, the losses, the CGM flat lines, the CGM rollercoasters, the times we nail a pizza bolus, the times we totally botch a rice bolus, the times we exercise and don’t have a crashing hypo, the hypos from out of nowhere, the stubborn highs that make no sense, the visits to HCPs that feel celebratory, the visits that make us feel like crap, the fears of the future and the present, the tech that works, the tech that makes things more difficult, the stigma, the desperation of wishing diabetes away, the horrible news reports, the crappy campaigns that position diabetes negatively and those of us living with it as hopeless, the great campaigns that get it right, the allies cheering us on. All of these things – all of them – form part of the whole that is me and my life with diabetes.
Happy diaversary to me! And thank you to the people along for the ride. How lucky I am to have their love and support in my life.
As for diabetes. I still despise it intensely. I still wish for a life without it. I still believe I deserve a cure. At the very least, I deserve days where diabetes is less and less present.
I am so forever and ever hopeful for that.
More diaversary musings
*More details of CWD’s Journey Awards can be found here. Please note that they are only shipped to US addresses due to postage costs.
What would you change about your diabetes diagnosis?
Mine was almost 22 years ago, but much is still fresh in my mind. While there is a lot I am eternally grateful for, such as the speed and accuracy of diagnosis, and the way I was easily able to access specialist care, there are things that I wish were different.
One of those things is the line-up of HCPs that was offered to me. Making sure I knew the basics of daily diabetes management, the importance of knowing how many carbs I was eating, and the impact of activity, were, of course, critically important to learn before I was sent on my way. But diabetes was presented to me with this very one-dimensional approach. It was all about the magic carb/insulin/activity equation. Get that right and all would be relatively simple.
I had the relevant HCPs that could help me get that equation right – the endocrinologist, the diabetes educator and the dietitian. This was the holy trinity of diabetes care, I was told. This was the team that had diabetes knowledge to share.
And perhaps, if I’d been able to keep diabetes all about numbers, that trio would have been enough. Alas, it didn’t take long for this new-to-me medical condition to move to my head. No one mentioned the anxiety and fear that started to accompany the distress that was due to not being able to meet any of the targets I’d been set, and feeling overwhelmed by just how much diabetes there was to do. Or the disordered eating that may creep into my thinking because of this sudden focus on food in a different way. Or the crippling fear of complications that was keeping me awake at night.
I wish a version of these words had been said to me: ‘Diabetes is not easy. You can do this, but it is not easy. But we are here to help you. And endocrinologist and educator can help you with the practical side of diabetes. Food questions can go through your dietitian. We have an arsenal of allied health professionals to think about when it comes to doing all we can to reduce the risk of diabetes-related complications. And if you ever feel that you are becoming overwhelmed or anxious or distressed, if you ever want someone to talk with someone about how you are feeling to work through what’s going on outside the clinical aspects of diabetes, we have someone here for that too. It is perfectly, perfectly normal for you to feel all of those things. It is also perfectly normal for you to not feel them! We can help with whatever you need.’
Planting that seed would have made those first few years – those years before I found an endocrinologist who did say those words to me – so very, very different. I may not have understood why I might need, or rather want, to see a psychologist straight away – I didn’t understand what diabetes was, let alone how it was going to impact on my emotional wellbeing – but I wish that I had known from the very beginning that I had easy access to a one if and when I needed it. And that it was perfectly understandable if I did.
While I believe that GPs, endocrinologists and educators all have a role to play in talking about emotional wellbeing, they are not experts in this area. Having our diabetes HCPs acknowledge the high mental burden diabetes places on us is reassuring, but they may not be equipped with the strategies to help us lighten that load. But a psychologist can – especially one that works with people living with diabetes or other chronic health conditions. Plus, I repeatedly see HCPs say that they don’t have time as it is to ask about mental wellbeing, because there is already so much to do in the allotted appointment time.
Here’s the thing: so, so many people with diabetes are not reaching targets. Now, while I don’t agree with measuring diabetes success on numbers, that is still the way that it is done in many settings. And with that in mind, so many of us are above recommended glucose levels and our A1cs don’t even closely resemble what guidelines tell us to aim for. Clearly what we are doing now isn’t working, in fact, I’ll be so bold as to suggest that the current standard HCP line up is not necessarily best for PWD. Would adding a psychologist to the mix help? Would the expertise a psychologist can offer to help us learn how to address behaviour change, distress, anxiety result in not only feeling better about diabetes overall, but also improve those other measures?
I am not for a second suggesting that everyone with diabetes should have to see a psychologist. I don’t think that PWD should have to see any HCP they don’t believe is helping. But I do believe that we should be able to access a psychologist as easily and readily as we can any other diabetes HCP. Psychologists should be integral in multidisciplinary teams in diabetes clinics in the same way that educators, dietitians and endocrinologists are.
In my experience, it wasn’t until I started working with a psychologist that I got any benefit from seeing the rest of the diabetes team. Go check out the hashtag #DiabetesPsychologyMatters for some more commentary on this from PWD, psychologists and clinicians. It’s already gaining momentum, but I think it’s time that it really took off…
There is never a better time to employ the WAIT (Why Am I Talking) philosophy than when speaking with someone newly diagnosed with diabetes. Even if there is lots I’d like to say, as I wrote in this oldie from the archives.
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She called me because someone had told her to get in touch. ‘Speak with Renza. She gets it.’ Is what she was told. She we organised a time to meet and over coffee we talked. And she searched my face for reassurance as she told me how scared she was feeling.
When I meet someone who has recently been diagnosed with diabetes, I say very little. I listen. I ask questions and gently try to find out what is going on in their head. I don’t say much about my own diabetes, because I don’t want to imprint my experience in their mind. Everyone feels different at the time of diagnosis and working out exactly what they are feeling needs some time.
I listen and sit there quietly and try to reassure and be positive. I nod a lot, and let them talk and vent and, if they need to, cry. Usually people cry. And I let them know it is okay. I did all of this with the woman who called me. She did cry and she did vent. And then she cried some more. And I said hardly anything.
But this is what I wanted to say:
- It is okay to feel scared and uncertain. Or angry. Or completely and utterly ambivalent.
- Because, you see, there is no right way to feel right now – or ever – about living with diabetes. And equally, there is no wrong way to feel.
- You don’t have to work this all out this week. Or next week. Or next year. In fact, you never have to work it out.
- But do work out what you can manage today and do that. And whatever it is, it’s enough. It. Is. Enough. And well done you for doing it!
- Find your tribe. In fact, this is what I want you to know more than anything. Others who are also ‘doing diabetes’ will help you make sense of this new world. You have to be ready to do that, but do be open to the idea. I wish that someone had introduced me to others with diabetes when I was first diagnosed. It took me over three years to meet another PWD and I felt so alone in those three years.
- And when you do meet people, don’t think that anyone has this diabetes thing worked out completely. Even those who say they do…
- …because, there is always more to learn, which is daunting and exciting in equal measure.
- I promise you – whatever you are feeling, whatever you are thinking, someone has had that same feeling and same thought. You are not alone. (Reading diabetes blogs will prove that to you!)
- Diabetes may feel like it is about to take over your life and it probably will for a little bit. And there may be times that it does again. But it will not define you for the rest of your life or determine who you are. It can be as much or as little of your identity as you choose to let it.
- You will be okay. You will be okay. You will be okay. (And, yes, I am saying that for your benefit as much as my own!)
- There will not be a cure in the next five years. Or even ten. I am not saying that to be pessimistic, I just want you to understand that hope is really important in living with diabetes. But unrealistic expectations that won’t come true are not going to give you that hope; they will destroy it.
- Ask questions. All of them! You may not like the answer (i.e. see previous dot point), but ask anyway. You will be amazed at the things you learn.
- Your diabetes; your rules. This will become more and more apparent the longer you live with diabetes. You don’t need to explain, apologise or justify anything you do to manage your diabetes. Ever.
- Anyone who makes you feel crap about your diabetes – whether it be the fact you have diabetes, or how you are living with it – needs to fuck off. (And if you can’t tell them that, find someone in your tribe who can! I am happy to be that person. Truly! I have the mouth of a trucker and I’m not afraid to use it.)
- Do not watch Steel Magnolias. Ever.
- Right now, this probably seems like it is the worst thing that will ever happen to you. This may sound odd, but actually, I hope it is. Because I know you can get through it.
- You will laugh again. And smile and feel light. You will not think about diabetes for every minute of the rest of your life. It will be there, but it does not have to rule your very being. It certainly doesn’t rule mine. You will learn where to place it in your world, and that is where it will sit.
- You do not need to feel grateful that you have been diagnosed with diabetes and not something else. Because it does suck. It’s good to remember that and say it every now and then. Or shout it out. While drunk.
- Go buy a new handbag. Trust me! If you want, I can help you to justify it as needing a new bag to cart around all your diabetes crap, but just do it for yourself. And while you’re at it, a new pair of shoes. Just because!
- Call me. Anytime. If you want. Only if you want. And even if it just to hear me tell you that you will be okay.
But I didn’t say those things. I only said this: You will be okay. I know this to be true because you are strong and resilient and capable. I know this to be true because many others have walked this path and worked out how to make it okay for them. You will do that too. It will be okay for you.
And I hope that was enough. Or, at least, enough to start with.
The Monday after National Diabetes Week is a chance to take stock, take a deep breath and take a moment to look back over the busy days.
This year’s campaign was terrific in that the messaging was strong and it got a lot of attention. It was great to see the same information being rolled out across the country, and shared internationally, too. I certainly believe the campaign’s main theme of needing to detect and treat all types of diabetes sooner resonated with people across the globe.
So, there are some of my highlights from last week:
Frank Sita can certainly claim best on ground for his relentless support of the campaign. He blogged, vlogged and SoMe’d the hell out of the campaign and was also interviewed in a great piece for The West Australian newspaper. (Plus, he nailed the #LanguageMatters talk with the journalist.) Nice work, Frank!
Diabetes NSW & ACT held their Diabetes Australia Research Program Awards on Thursday night, using NDW as an opportunity to underline the importance of research, and recognise just some of the wonderful researchers working to unwrap the secrets of diabetes.
There are far too many stories of missed type 1 diabetes diagnosis, and many were featured last week. You can see these stories on the Diabetes Australia Facebook page. It’s simply not good enough that people have to become really, really sick before they are correctly diagnosed. Everyone must know the 4Ts.
There was a most welcome announcement with Health Minister Greg Hunt launching Australia’s first national diabetes eye screening program to reduce vision loss and blindness in people with diabetes. this is a great example of Government, and industry (Specsavers will also be contributing to the program) working together and with health groups to support people with diabetes.
Bill Shorten’s Friday evening call to the Government to broaden CGM funding was beautifully timed and was a great way to end the week, providing an awesome bookmark to the previous week’s piece on The Project.
Theresa May would have no idea that she provided an outstanding opportunity for us to get in a little #NDW2018 last-minute advocacy and awareness across the national press, just by wearing her Libre sensor.
And so, it’s a wrap. Except, of course it isn’t. We still need to remind people of the signs and symptoms of diabetes. We need better detection programs. We need more awareness. This campaign doesn’t get boxed up and archived, never to be thought of again. We must keep talking about it.
Of course, National Diabetes Week may be over, but for those of us living with it, every week is diabetes week. And so on we go: ‘doing’, ‘living’ and ‘being’ diabetes.
Yesterday an article was published across Australia detailing a new report showing that Australians with diabetes are missing out on the recommended levels of diabetes care. Most of these people receive their diabetes care in general practise.
A couple of things before I go on:
- The article was behind a paywall, but Diabetes Australia shared an image of a portion of the it, and that can be accessed here. If you have access to a News Ltd. account, you can read the article here.)
- I want to say that in writing this post today I do not want to be seen to be doctor-bashing. I don’t believe that is constructive in any way whatsoever. However, I do think that there needs to be acknowledgement that the level of diabetes care in general practise is not ideal for a lot of people.
- The language of the article was atrocious. It appeared first under the heading ‘How diabetes sufferers are dicing with death’ Seriously, journos, ready the freaking Diabetes Australia Language Position Statement.
Onwards…
There was some discussion online after the article was shared, with a few doctors believing the article wasn’t all that helpful and feeling that it was unfairly unfavourable towards GPs. Someone also commented on the language used. (I’m not sure if they meant on Twitter or in the article. The language in the article was strong and very critical of GPs.)
The report is damning, and it shows that the results for people with diabetes are not good at all with only one in three people diagnosed with diabetes receiving expected standards of diabetes care. Only half had their A1c checked, and of those, only half again were in range.
This is despite there being a documented diabetes annual cycle of care (for which GPs receive funding). If completed fully, the annual cycle of care includes: annual A1c, cholesterol, and kidney checks, weight and blood pressure checks, as well as two-yearly eye and foot checks.
For me, it shows yet again how stacked the decks are against so many people with diabetes. We don’t receive the level of care recommended and then, when we don’t meet expected outcomes, or develop diabetes-related complications, we get blamed.
If we want to talk about things that are unhelpful and not constructive, let’s begin with that.
We seem to forget that most people don’t innately know what is required to manage diabetes, or what screening checks are required – especially people newly diagnosed with the condition. A lot of people rely on their healthcare professional – in the case of diabetes, usually their GP – for this.
I’ve written before that in my case, my GP is not in any way involved in my diabetes care. This is a deliberate decision on my part. I understand it is also a privileged decision – I have easy access to my endocrinologist, and other diabetes specialists for all my diabetes healthcare needs.
But that’s not the case for everyone, and a lot of people are reliant on their GP for all their diabetes clinical care.
People with diabetes are being let down.
Even though pointing fingers and appropriating blame is not necessarily helpful, it’s what we seem to do. We can blame the system. We can blame a lack of funding. We can blame a lack of continuity of care. We can blame the fact that there are no coordinated screening programs. We can blame the need for more specialist care. We can blame a lousy and ineffective electronic records system.
But what we can’t do is blame people with diabetes. No one asks to get diabetes. No one asks to get diabetes-related complications. So how is it possible that in a system that is letting us down, we are the ones blamed when it happens?
Also, this week, we have heard story after story of missed type 1 diabetes diagnoses with people reporting that despite seeing their GP (often repeatedly) about their symptoms, they were not checked for type 1 diabetes.
It is undeniable that some GPs simply do not know enough about diabetes to diagnose it in the first place, and then to treat it in an ongoing and effective way, and this is leading to those of us living with it not receiving an adequate level of care to live as well as possible with diabetes.
While there may be some hard truths in the report, hopefully the result will be better care for people with diabetes. Because, surely, that is all that matters.
I am certain that almost all the people who read this blog are in some way affected by diabetes. (Because, really, if you are not, why would you be reading?) It makes sense that the people who want to hear about my real life with diabetes have their own real lives with diabetes.
Most of the blogs I read are to do with diabetes. Most of my interactions online are to do with diabetes (with the occasional detour down avenues of language, Nutella recipes, Effin’ Birds, and idolising Nigella).
It makes sense and there is nothing inherently wrong with focusing on things that we understand, or that is interesting to us personally. Of course we feel a connection when reading stories by others going through similar experiences, and that makes us feel safe and less alone.
This week, however, I am hoping that a lot of what we are talking about is received by people outside the diabetes world. Because #ItsAboutTime that others know and understand the importance of early diagnosis and treatment of diabetes.
It’s National Diabetes Week (#NDW2018) and Diabetes Australia’s campaign this year is building on the 2017 campaign of raising awareness of the signs and symptoms of type 1 diabetes, and the fact that there are 500,000 Australians with undiagnosed type 2 diabetes. (Disclosure: I work for Diabetes Australia. I am writing about this because it is an important issue, not because I have been asked to.)
These days, my loved ones and I know all about the symptoms of diabetes. And somehow, I knew them just over 20 years ago when I walked into my GPs office and said ‘I’m thirsty all the time, I can’t stop peeing, I’ve lost weight and I’m exhausted. I think I have type 1 diabetes.’
My GP told me that she thought I was being a hypochondriac, so I’m actually not sure if she would have sent me off to pathology for a fasting glucose check as quickly as she did had I not prompted her with my (as it turns out correct) self-diagnosis. (In hindsight, getting me to pee on a stick would have been an even better idea, but I didn’t know that at the time…)
The rest of the story is that a few days later, I was told I had type 1 diabetes. That’s my whole story. It’s utterly, completely, totally uneventful and, quite frankly, I love that it is.
But that’s not the way it is for a lot of people. In fact, each year 640 Australians end up in hospital because the signs of type 1 diabetes have been missed. In many cases, these people have already been to see their GP one, two or more times because they , or their families, have known that there was something not quite right, and they were not checked for type 1 diabetes.
Is that your story?
Here’s the thing: if you have diabetes, or someone you are close to has been diagnosed type 1 diabetes, you know the signs. You may not have known them beforehand – in fact, you may have your own diagnosis story that mirrors those that we are sharing throughout NDW – but you know them now. You are not the target audience for this campaign.
The target audience is people in the community without a connection to diabetes. It’s GPs who are not routinely asking people to pee on a stick so they can quickly and easily check if a person has glucose in their urine.
We need to tell those people. Because we can talk all about this amongst each other all we want, but then all we are doing is adding to the noise in the echo chamber. We need to step outside of the diabetes world and shout from the rooftops 4Ts of type 1 diabetes:
These symptoms need to trigger people – everyone – to automatically think type 1 diabetes.
Share the poster. And ask everyone you know to share it too – including people not affected by diabetes. #ItsAboutTime we ALL knew the 4Ts so that we can diagnose and treat type 1 diabetes sooner.
Official ‘Look! We’re at a conference!’ photo.
One of the best things about going to diabetes conferences is finding time to speak to, and bounce ideas off, fellow people with diabetes. It’s always so great to hear others’ ideas and opinions – sometimes I find myself nodding in furious agreement, and other times their views are completely opposite to how I see things.
A couple of weeks ago at the America Diabetes Association Annual Scientific Meeting, The Grumpy Pumper and I spoke about a post I was writing (and subsequently published last week) about using the latest diabetes technologies at diagnosis. I knew that he would have some strong thoughts on this topic.
Grumps said he had some concerns with my ‘give us all the tech right now at diagnosis’ approach, and today, he’s written his thoughts. (Seriously – my pestering him to write is paying dividends these days! Note to self: keep on it!)
Here’s what he has to say…
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I’m not really sure if this is a What Would Grumpy Do (#WWGD) post or not. Or if it’s just rambling of the kind of crap that occupies my tiny brain on a daily basis.
Anyway…
Last week, the Nigella of the DOC posted about the use of diabetes tech and how early someone should be offered it post diagnosis. (Renza note: Grumps: We’ll be talking about that nickname next time we catch up…)
This subject always interests me, and, to a point, concerns me.
Don’t get me wrong: I love the idea of everyone having the choice of whatever kit they want and need to manage their diabetes, as early as possible in their journey with diabetes, to be able to relieve their own personal burden of diabetes. This also goes for parents and carers too – (those that manage diabetes in a different way, for or with the person with diabetes, dependent on their age etc.).
Of course, the utopian world is for a fully functioning ‘Artificial Pancreas’ (AP) to be commercially available and affordable; a world where at diagnosis, everyone has access to this and the information to make an informed choice if it’s right for them; a world where for most, if not all, that burden of diabetes is not even realised…
My interest and concern?
Well, my job, (as uninteresting as it sounds to most), is business continuity. Or planning for what happens when (as an organisation) things go wrong: when technology that you rely on is unavailable; when your supply chain lets you down; when there is a skills shortage to carry out the things you need to do.
As a result, my brain (tiny as it is) constantly sees the possible risk of what could go wrong, and the mitigations and plans. (The saddest part? I actually enjoy it…)
You can maybe see where I’m trying to go with this now?
The more we rely on diabetes technology, and the earlier we do so, then we (in my opinion) need to have better contingency plans in case things go wrong.
Our ultimate safety net is hospital. However, none of us want to have that as our contingency, do we?
Continuity planning isn’t complicated: it can be detailed; it’s often dull. Ideally it never has to be implemented, but inevitably it does.
The official definition of business continuity is:
‘…the ability of an organisation to maintain essential functions during, as well as after, a disaster has occurred.’
Basically: the ability to carry out the essential things you need to do when shit goes wrong!
I’ll try and keep this brief since I can see you are already dropping off to sleep.
For me, with my diabetes management, it breaks down to this:
Essential functions (the minimum things I need to achieve):
- Avoid DKA
- Stay in a safe glucose range (so wider range than usual target, and sod any talk of flat lines!)
- Be able to detect and treat hypos
- Be able to fulfil driving regulations
Tasks I need to do to achieve the above:
- Get a measured amount of insulin into my body
- Be able to check my glucose levels
- Treat a hypo when detected (meter or hypo awareness)
Critical tools needed to achieve the above:
- Insulin
- Insulin delivery method
- Blood glucose monitoring system
- Hypo treatments
The level of continuity that you wish to plan for is total up to the individual. Ideally, we usually try to plan for minimum disruption.
My current diabetes kit is:
- Insulin
- Insulin Pump
- CGM
- Blood glucose meter
- Hypo treatments (various)
Whilst I am lucky enough to have spares for most of this kit, I, in my opinion, benefit from being old school. My journey to diabetes technology has been progressive and having started on injections (via syringe) I am confident that I have the skills to keep myself safe if all my technology failed.
As a result, my base-level back-up is:
- Insulin
- Syringe
- Blood glucose meter (and of course strips)
- Hypo treatments (or cash to purchase as a back-up to my back-up)
So, there you have my interest…
My concerns?
Skills shortage.
In that utopian world where all go onto AP at diagnosis, how do we ensure that we have the skills to stay safe if technology fails? Or if a suppler fails to be able to get a component to us? Let’s face it, a hurricane in the wrong place can cause production issues that lead to shortage of supply; transport strikes; fuel shortages. All of these, and more, have possible impacts.
So if we don’t have the skills to implement our back-up plan, then what use is it?
Some would argue that PWD would need to be educated on MDI etc., which is very true. However, it is another thing for most adults to know how to inject and actually doing it for the first time.
Then there are children with diabetes. Diagnosed as a baby and on a pump soon after, the child may never know how to inject. Until they need to. That could be a huge psychological thing for any child.
There is no one easy answer. As always, and as I said above, our ultimate safety net is hospital so we should always be safe.
But my advice to myself is:
- Have a plan
- Know how to use it
- Wear sunscreen
Live Long and Bolus!
Grumps
Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here.
I met someone the other day – a friend of a friend – who had recently been diagnosed with type 2 diabetes.
Within the first 15 minutes of our casual conversation standing in the street as the Saturday morning rush happened around us, I heard these words from their mouth:
‘It’s my own fault. I should have gone to the doctor sooner.’
‘I am not a good diabetic at all.’
‘I am doing a really bad job checking my bloods.’
‘I’m not sure how long I need to keep checking my bloods. Or how often, really.’
‘I was told if I didn’t look after myself I’d need injections. I’m terrified of needles.’
‘I have a list of foods that I should and shouldn’t eat.’
‘I’ve never been sick before. And now I feel as though people think I am sick. But I feel fine.’
‘The doctor said I don’t have diabetes too badly, but then told me all the things that could go wrong.’
‘I am scared. I don’t know anything about diabetes, but I am scared that I am going to go blind. I was told that’s what would happen.’
Here was an incredibly confident, capable and clear thinking person, not much older than me. Until now, their contact with HCPs had involved annual flu jabs (kudos for that!) and a trip to the GP for the occasional virus. They told me they’d never spent a night in hospital.
The diabetes diagnosis came about after their GP suggested routine blood checks on the day they went in for their flu shot. The following week, they were told they had diabetes. This was just last week. So far, this person had spent about fifteen minutes with their GP and 45 minutes with the diabetes educator who works out of the clinic.
And look at how diabetes has been presented in that time. Already, this person feels as though they are a ‘bad diabetic’ and failing in their treatment. And they are scared.
I responded to some of those comments gently:
‘You DID go to the doctor – for your flu shot. And when they suggested you have a blood check, you did it there and then.’
‘You are doing a great job. There is no such thing as a bad person with diabetes. We do the best we can with the information at hand.’
‘This is all new. You are checking your blood sugar and that’s amazing. Well done. You didn’t have to even think about that two weeks ago!’
‘Do you have a follow up appointment? When you go back, as why you are being asked to check at the times they’ve suggested. And if this is something you’ll need to do for the next week…or month…or longer.‘
‘It’s perfectly understandable to be afraid of needles. I don’t know anyone who likes them. And you may need insulin one day. But not yet. And if you do, that’s not because you have failed. It’s because diabetes needs to be treated and sometimes with type 2 diabetes, (and always with type 1 diabetes) insulin is that treatment.’
‘Have you been referred to a dietitian? It’s really hard to change the foods you’re eating if you’re not sure about diet. Ask for a referral.’
‘I don’t really think of having diabetes as ‘being sick’, so I understand what you mean. But you will need to think about your health differently. That doesn’t make you a sick person, though.’
‘It’s perfectly, perfectly understandable to feel scared. If you think that having a chat with a psychologist or counsellor will help with that, ask your GP.’
‘Also … find some other people with diabetes and talk with them. Here’s my number. Call me any time.’
Imagine, if instead of feeling the way they were feeling, this person felt empowered, confident and assured – even if there was a bit of fear and uncertainty in there.
On the day we are diagnosed, we walk into the GP’s surgery not having diabetes. And walk out with a diagnosis.
It starts early. Those messages at diagnosis can impact how we feel about our diabetes for a very long times – indeed the rest of our lives.
Little did I know that on 15 April 1998 my life would change forever.
Little did I know that I would learn just how strong I could be at the times I have felt most vulnerable.
Little did I know that as my beta cells were being destroyed, a fire was stirring up as I readied myself for a career in advocacy.
Little did I know the power of insulin.
Little did I know that what would save me was my peers walking the same path, before me and with me.
Little did I know that I would be able to escape into my head as I tried to make sense of diabetes, and from there I would start to share my story.
Little did I know that while I felt the health I took for granted be swept out from under me, that I would actually become the healthiest I ever could.
Little did I know that my focus would move from music education to information provision about living well with diabetes
Little did I know that the love and support of strangers would see me through some of my darkest times.
Little did I know how much my family would rally around me, hold me up and get me through.
Little did I know that use-by dates on boxes of lancets are a waste of time!
Little did I know that sometimes, laughter, while not necessarily being the best medicine (insulin gets that award!), it is certainly what helps to make a situation manageable.
Little did I know that my then-boyfriend, now-husband, would be the greatest quiet advocate I could ever hope for.
Little did I know just how fortunate I am to have been diagnosed with diabetes living in Australia, or how uneven the diabetes landscape is for those in some parts of the world.
Little did I understand privilege.
Little did I know that I would learn to wear the badge of deliberately non-compliant defiantly, proudly, loudly.
Little did I know that the combined challenges of diabetes combined pregnancy would almost break me, the reward would be a daughter who has, every day, repaired the hurt, heartache and pain. In spades.
Little did I know that advocating for those of us affected by diabetes to be given the first seat at the table, and a microphone at a conference would be the underlying message of all my work.
Little did I know that the voices that matter are often the ones that don’t get to be heard.
Little did I know that my body would be permanently connected to technology that allows me to do the very best I can.
Little did I know that someone nodding and agreeing that my health condition sucks big time is actually all I need to hear when things are so tough.
Little did I know that while there were times the health system and the healthcare professionals within it seemed to be trying to work against whatever it as that I was achieve, once I found the ones who would listen to me and work alongside me, I have felt nothing but supported.
Little did I know that food was such a source of political angst, or something that others felt they have the right to force upon others.
Little did I know that there are so many cures for diabetes; none of which work.
Little did I know the power that words have – the power they have to build me up and to cut me down, often at the same time.
Little did I know that Twitter and Facebook would be platforms I use to share, to learn, to engage.
Little did I know that the anchors of love, support and friendship I have found in the diabetes world are just as important, if not the most important, aspect to my diabetes care.
…I know all that now. And so much more. My diabetes turns twenty this weekend, and with it, I feel a sense of achievement, relief, triumph. And deep-seated sadness, too.
I feel diabetes has taken a lot from me, but it has also given me some gifts that have shaped me into the person I am today. I feel now that I can stop feeling like a newbie in the diabetes world and perhaps stake some claim to being part of, if not the old school, the middle school.
When I was diagnosed, the idea of living with diabetes for twenty years seemed like a life sentence and I guess in some ways, it kind of is. I still fear what is around the corner; there is so much unknown about diabetes. But I feel I can look back with some pride and complete understanding of how fortunate I am. I managed to get through the first twenty years relatively unscathed – mostly through luck and circumstance.
I can’t say I’m necessary looking forward to the next twenty years of diabetes. But I’m doing all I can to be ready for it.
Things I did know: my mother’s Xmas zippoli will always – ALWAYS – be part of my eating plan!
More diaversary writing:
Diabetogenic 